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Author
Topic: Behind Closed Doors (Read 8417 times)

I'm not so sure how I feel about this as it might result in a spike in a sense of false security with people thinking they tested neg "as of..." (and) especially with the convenience factor added, it might dissuade them from testing regularly in an actual healthcare setting.

Today Housing Works’ Larry Bryant, Director of National Advocacy and Organizing will tesify before the Food and Drug Administration, who is considering approving of an over-the-counter HIV test. If approved it could be soon purchased at your local drug store.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

I'm all for it. There are many people who will never ask their doctor for an HIV test. And, many docs who will never offer it. There are people who will never go to the health department for a test. This will allow those people to take the test at home in private. I would hope the test would come with contact info on how to seek treatment in your area.

I believe this will serve to get more people diagnosed early, who otherwise probably wouldn't get diagnosed until they went to the ER very ill.

although I wasn't all that happy with the truvada as prescription PrEP decision (I don't think it's has a high enough effectiveness rate for people to risk their lives. sorry about that. that's a whole other thread. LOL), people here suggested it was a fine measure as ANY measure to help fight the epidemic was worth it. I guess the same applies to this newest intervention. Anything that helps identify more infected so that they can get tested, treated and encouraged to help halt the spread of HIV is a good measure.

the only thing i don't like about this is, lets face it when we all received the news by a dr or whoever it was devasting. helpless feeling etc. could you imagine just taking it on a random monday night after work by your self and getting the poz dx.? all by your self? terrible.more terrible than we got the news and that was pretty terrible.other than that i love it.

If these were available, I may have found out that I had HIV earlier. I know I would have done a home test well before I ended up in the clinic with AIDS defining illness. The doctors still had to talk me in to taking the test.. I guess I just didn't want to know.

That being said, I am glad that I found out from the doctor. The staff helped me get my first appointment with an ID doctor-- which is pretty much why I'm on meds today.

I'm not so sure that I would do much if I was at home, alone, with an 800 number.

My gut says that any illness that's going to need a prescription med to treat ought to only be available from a doctor.

good point, since we're talking about a fatal illness if left untreated.

as far as talking to a doctor, etc. there are plenty of people here who have turned out just fine with no support whatsoever when told. Back in the day, quite a few of us were told "you've got the AIDS. get out of this office now, go home and get ready to die." That's not much support, and yet here we are 25-30 yrs later.

Don't get me wrong though, while I think that support is fine and dandy (and work as a peer counselor with the newly diagnosed at my ASO), immediate support just after the news and before any of it has been processed isn't always that beneficial. I think a lot of people only hear "you're positive" at that first appointment, no matter what else gets said.

I would imagine that the literature that comes with this test should say that a Western Blot is needed for confirmation, so I would guess that users of this test would be directed to see a doctor soon after a possible positive, where they would receive much more support.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

From the article: The OraQuick In-Home HIV Test has strong specificity (99.98 percent). Whereas the OTC test will yield one false-positive result for every 3,750 true-negative results among people who aren’t infected with HIV, the professional oral swab Oraquick test yields one false-positive for every 462 true-negative results.

The OTC’s sensitivity, however, averaged only 92.98 percent, compared with the 99 percent sensitivity associated with the professional OraQuick oral swab-based assay.For every 13 “true-positive” results using the In-Home OraQuick test, there may be one false-negative test result—or approximately 3,800 false-negative test results per year—an analysis of the Phase III clinical trial data showed.

I think it's a terrible idea for so many reasons. Here's just one... We should be concentrating on getting GPs and other health care professionals to regularly offer hiv testing as a matter of routine, thereby lessening the stigma of testing. Giving people the opportunity to test in the closet only helps to keep hiv in the closet.

We need to be normalising hiv testing, not further suggesting and reinforcing the idea that it's something shameful to be done behind closed doors.

And that high rate of false negatives is horrifying. I can't believe they voted unanimously in favour of such a flawed product.

Orasure just wants to make an OraQuick buck off the obsessed, those without health insurance and those who are frightened of stigma. That's what it looks like to me, anyway. It's despicable.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think it's a terrible idea for so many reasons. Here's just one... We should be concentrating on getting GPs and other health care professionals to regularly offer hiv testing as a matter of routine, thereby lessening the stigma of testing. Giving people the opportunity to test in the closet only helps to keep hiv in the closet.

We need to be normalising hiv testing, not further suggesting and reinforcing the idea that it's something shameful to be done behind closed doors.

This is precisely what bothers me about an in-home test for HIV. It encourages people to think of HIV as something you discuss and deal with behind closed doors.

What's wrong with going to the doctor for an HIV test, just the same as is done for thousands of other medical tests? Isn't this what doctors are for? And if people don't want to go to their doctor to get tested in the first place, what makes you think they are going to go see their doctor after they have a positive result with an at-home HIV test?

And if it is such a great idea for HIV, why isn't it also a great idea for others diseases?

This at-home test just feeds into the current stigma / shame surrounding HIV. I suspect Ann is right -- it's all about making money for the manufacturer of the test.

« Last Edit: May 16, 2012, 01:23:46 PM by Buckmark »

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

We need to be normalising hiv testing, not further suggesting and reinforcing the idea that it's something shameful to be done behind closed doors.

I think Alabama is one of the few states (maybe only state) now to include HIV testing in it's regular screening at the hospital ER. Up until now, because of the years of stigma and quest for privacy rights, HIV testing has required separate special permission to be signed by patients and often has not been suggested by doctors. (I know plenty of people who would have known they were HIV+ a lot sooner and saved themselves a lot of pain and agony, if only ER were running an HIV test as part of a standard panel) Some, like myself, consider this stigma against testing as part of a legacy from the past when issues like closing gay bath-houses were deemed by many to be active threats against a minority. Why even today many people refuse the test because their names are then reported to state and federal databases.

Many people still receive discrimination due to an HIV positive result, sometimes from just being given the test for HIV, so it will be a long haul yet to "normalize" HIV testing.

hmmm, interesting article, Ann. It seems that 44%-72% effectiveness of Truvada and 93% effectiveness for this home test is just "good enough" to pass the scrutiny of the FDA

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

There is a lot of stigma, fear, and shame about cold sores. So, it is a really long haul to normalize HIV and testing. Many live in small towns and will not ask their doc for a test. Or, they can't afford to go to the doc and pay for lab test.

Any additional tool is good. How many infections could have been prevented from people knowing their status and not spreading it to others. Or, in the heat of the moment when a young guy or girl is pressured for bareback sex. People will say the strategy should be condom education. We know that isn't always going to happen, no matter how much education there is. If I could have tested the friend from whom I acquired my infection, I may still be negative today.

Comparing the Truvada issue with the Orasure issue is truly apples and mangoes here.

When Truvada "fails," the person is exposed to HIV infection and might seroconvert.

When the efficacy of the HIV test fails, a person who is already positive stands a good chance of spreading the virus to others.

In addition to people being led to believe they're hiv negative when they're actually poz and causing ongoing infections, when word gets out about the high rate of false negatives associated with the OTC product, it's going to cause many people to lose confidence in the tests given by trained professionals in clinics. This is the last thing we need. There are already enough people who don't trust their conclusive results as it is.

WHat we should be doing is promoting the widespread use if HIV testing in GO clinics, GUM clinics, and even walk-in clinics at pharmacies like Walgreens and WalMart. Get the PRO QUALITY DUO TEST out into the mainstream, professionally administered at the appropriate time, and you will notice a sharp decline in infections.

By the way, going by the study I read, the low end of the efficacy was not 93% but rather just under 89%. If you thought 93% was too low (and 95% is considered the low end of reliability) then 89% is just laughable.

It will diminish the credibility of the test, and it will facilitate an environment where peple make important sexual decisions based on a test we know to be less reliable than it can be - than it SHOULD be.

We're sure going to see more immaculate infections here.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

Exactly. And that was one of my concerns in my original post. I just feel it will lead to people who decide to go the home testing route to not test on a regular basis because they will feel no need to after using one of these OTC deals.

You see it all the time in these online profiles where some guy will have "neg as of..." and that ... was 20 years ago. OK, I'm exaggerating regarding the date, but you get the idea.

If someone uses one of these tests and it tells them that they are neg, what reason would they have to go into a healthcare setting for a real test since they feel the OTC results are valid?

Most likely (many of) these people will find out after they are hospitalized and symptomatic that the reliability of those tests is just for that point in time when they used it and that it does not give them an express reason NOT to test on a regular basis or follow up with a test in a medical environment just to confirm the OTC results.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

Definately a bad idea, people need counseling for this like any other life altering event. If you can't go to a profesional to get tested, you have no business doing at home. Also, people will used this kit for bad purposes as well, like at parties, or to out people who keep their status under wraps. Its a bad, bad privacy and safety issue, one that is best left to the professionals, in a clinic, not as an activity at a party or a nosey persons house, etc.....

HIV diagnosis is not about simply returning a test result and sucking it up. Take a look at the bedwetters who infest the I Just Tested Positive forum like so many fleas in rug to understand the consequences of this monumental failure in proper public health policy.

To be effective HIV testing must be accompanied by proper pre and post test counselling, no matter the result.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I'm with Matty here. pre and post test counselling is part of the protocol for giving the test in Australia and I think with good reason. Frankly, it is a bare minimum, this isn't a flu it won't clear up in a week so what's the supermarket style approach to health care?

Convenience is ok, but risks that jump out at me include lack of follow up care, and impact of false results being recieved by people in isolation. It's hard enough news to get, even if all the best possible professional supports are in place!

Other people have also made great comments about bringing the issue of regular, normalised testing into the mainstream which I also agree with. Is there a risk this product could encourage a reduction in other testing services?

And the idea of swabs before bb episodes among the "it won't happen to me" crowd is alarming but undoubtedly accurate. I'm personally alarmed at the number of mid 20s boys who seem to be keen to forgo a condom on basis of a nod and a promise immediately upon meeting via online hookup sites.

I would love to know the kind of counseling you folks got across the ponds. I got, "You tested positive. You're CD4 is actually in the AIDS category. I'm sorry. You mentioned having dogs. You should think about giving them to somebody. I'll check back later." I'll take the home test, thank you. And, I highly doubt I was a very rare case. I have no doubt this plays out daily. You might get some literature from a nicer doc. Don't get me wrong. I am sure many of the folks working in testing and prevention treat people much better. But, there's a lot of folks who will never ever set foot in a health department or STD clinic.

I would love to know the kind of counseling you folks got across the ponds. I got, "You tested positive. You're CD4 is actually in the AIDS category. I'm sorry. You mentioned having dogs. You should think about giving them to somebody. I'll check back later." I'll take the home test, thank you. And, I highly doubt I was a very rare case. I have no doubt this plays out daily. You might get some literature from a nicer doc. Don't get me wrong. I am sure many of the folks working in testing and prevention treat people much better. But, there's a lot of folks who will never ever set foot in a health department or STD clinic.

Then fuck 'em. If they're too stupid to see a doctor they deserve to die.

This is the way I look at it: if you're a sexually active gay man you should be responsible and get tested regularly in a place of your choosing that you know offers pre/post counseling. If you're busy fucking away and didn't bother with anything until you landed up in a hospital, don't expect white glove treatment. They're busy treating gun shot victims to spend much time holding your hand about becoming the latest victim in a 30 year disease.

As far as home tests go, I look at it this way: it's not meant for everyone, and if you go and buy it you should be smart enough to know you're not going to get any counseling. I figure it's useful for the 16 year old turning tricks from money under the interstate underpass up in Kensington, etc. Additionally, it's an excellent way to make a bit of money off of the OCD types that populate Am I Infected that think they have been repeatedly exposed from getting manicures.

I think it's a terrible idea for so many reasons. Here's just one... We should be concentrating on getting GPs and other health care professionals to regularly offer hiv testing as a matter of routine, thereby lessening the stigma of testing. Giving people the opportunity to test in the closet only helps to keep hiv in the closet.

We need to be normalising hiv testing, not further suggesting and reinforcing the idea that it's something shameful to be done behind closed doors.

And that high rate of false negatives is horrifying. I can't believe they voted unanimously in favour of such a flawed product.

Orasure just wants to make an OraQuick buck off the obsessed, those without health insurance and those who are frightened of stigma. That's what it looks like to me, anyway. It's despicable.

Quoted because this post says it all, and it saved me from repeating everything.

About the false-positives...... If they are going to approve a home test, why aren't they putting the professional 20-minute oral test on the market for home use? I've read it costs just $20, whereas it is believed this test will cost at least double. What is the difference between the two? I never had the professional one, but have been told it is just a simple swab of the mouth--just like this one. The people I know who've had the professional said you don't need any special training to use the professional one that is already in use. And, the professional test has high accuracy, right? If no special training is needed for the professional, it is odd why they just wouldn't market that for home use.

Is there something different about the professional that you would need to be trained?

Has anyone ever really seen an Oraquick test after someone swabs their mouth with it and is ready to get the result? The lines on the test are very, very faint. When I sat in with our prevention department on testing, I couldn't see the lines (my eyes are not that good). So what if someone, who isn't going to a professional clinic or ASO, to get the test, has bad eyes and cannot see the line for a positive result? Also, at the ASO I work at, if there is a positive result, it is always followed up with a blood draw for conclusiveness. This is a definite lacking with the at-home test.

I'm not for this, not at all. There's no one to "read" the test correctly, no follow-up conclusive test, and no one to talk to the people about risk reduction etc.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Ted, the problem isn't so much with false positives, it's the high rate of false NEGATIVE results that is worrying. They seem to think it's down to a combination of patient error and people using it while still in the window period.

In a nutshell:

False POSITIVE - The OraQuick In-Home HIV Test has strong specificity (99.98 percent). Whereas the OTC test will yield one false-positive result for every 3,750 true-negative results among people who aren’t infected with HIV, the professional oral swab Oraquick test yields one false-positive for every 462 true-negative results.

That's only one false positive result for every 3,750 true negative results.

However, they're predicting one false NEGATIVE result for every THIRTEEN true positive results.

False NEGATIVE - The OTC’s sensitivity, however, averaged only 92.98 percent, compared with the 99 percent sensitivity associated with the professional OraQuick oral swab-based assay. For every 13 “true-positive” results using the In-Home OraQuick test, there may be one false-negative test result—or approximately 3,800 false-negative test results per year—an analysis of the Phase III clinical trial data showed.

We (me, Tim, Andy and JK) were pretty astounded when the study briefing came out. We were expecting a high rate of false positives, going by the track record of other in-home (non-FDA approved) hiv test kits. I couldn't believe what I was reading about the high rate of false NEGATIVES - and I couldn't believe they were still going ahead with wanting to have it approved.

If anyone cares to read the FDA briefing document (pdf) detailing the studies, it can be found here.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I would love to know the kind of counseling you folks got across the ponds. I got, "You tested positive. You're CD4 is actually in the AIDS category. I'm sorry. You mentioned having dogs. You should think about giving them to somebody. I'll check back later." I'll take the home test, thank you. And, I highly doubt I was a very rare case. I have no doubt this plays out daily. You might get some literature from a nicer doc. Don't get me wrong. I am sure many of the folks working in testing and prevention treat people much better. But, there's a lot of folks who will never ever set foot in a health department or STD clinic.

Hi Tednlou2The counseling which is mandatory here in oz discusses risk factors, the specs of the test (eg window period etc) implications and future health requirements and immediate support options if positive. That said, it depends on the skills of those giving the news, and as others have mentioned this can be mixed. Dedicated sexual health clinics would have more experience and current training in my experience. They are sex friendly places, non-judgemental, experienced, generally free or subsidized and well staffed in oz which I am so glad for.

I have been getting this test since I was 17 years old, so am used to the chat with the nurse each time. It's a chance to reflect on my sexual behaviors over each testing period as well as to address anything which did crop up. Even tho, I was not ready to get a positive result a month or so ago even after many of these sessions, But can not imagine being told it just over the phone, or by email or online health insurances login as people have written has been their experience. Wow, that's harsh - sorry to hear that is that case for so many of us.

You seem to have gotten it really roughly delivered. I'm a dog owner two, sitting here with two as I type. I think you could find up to date information about pets and your health, here or the body site I think I saw something. Manly said be clean and hygienic, careful of litter and so on... Get someone else to clean up sick or runny dog dropping if needed, which is fine with me Read up for yourself, the love from your dogs does not have to go because of this. Lots of poz peeps have pets.

I've cut this outline of the australian testing guidelines from one of our health-department sites for you. The post test is similar, focusing on whatever elements are relevant. Eg. Future protective behaviors and/or treatment.

HIV Pre-Test Discussion

Whilst pre- and post- test discussion is generally associated with testing for HIV, components of pre- and post- test discussion apply to testing for many sexually transmissible and blood-borne infections.

Ensure client is aware of the confidentiality surrounding the test

Assess risk factors such as types of sexual behaviour, number of partners:Potential for exposure to HIV, Hepatitis B, Hepatitis C, Syphilis and other STIs such as Chlamydia

Determine when exposure to risk occurredPrevious testingwhen, whereis result available?what was tested?

Explain the test:Why the test is done (treatment, improve outcomes, reduce risk of transmission)How the test is doneWhat the test tells and does not tell (ie discuss exactly what you are testing for)For infections with window periods, discuss implications, advise if and when repeat testing will be necessary

Confidentiality issues:In order to ensure confidentiality and to standardise notification, medical practitioners are requested to use the National Centre Code when requesting HIV testing and, if the the test is positive, when notifying the AIDS Medical Unit. The code consists of four letters - the first two letters of the surname followed by the first two letters on the first name, all printed in block capitals, followed by the date of birth. For example: - John Smith born on 23.09.64 becomes SMJO 23.09.64 - John McSmith born the same day becomes MCJO 23.09.64Discuss ways the patient should protect their own confidentiality (eg carefully consider who they will tell)Inform the patient of legal requirements for and mechanisms of notification in the case of a positive test for a notifiable infectionInform the patient of the procedures relating to contact tracing in the case of a positive test

Discuss how and when to obtain results:It is strongly recommended all HIV (and probably Hep B and Hep C) results are given in person by medical practitioners or experienced sexual health nurses. It is important to stress to the patient prior to the test that test results will not be given over the phone to ensure the patient does not assume the worst when asked to come into the surgery to get the results. Consider making an appointment to give back the results at the time the test is taken

Discuss implications of a negative result:Discuss prevention - don't let people go away with the idea a negative test somehow confers immunity on them for future risk taking behaviour.Reinforce the positive aspects of safe sex practises. Opportunity for further educationMay require repeat test if exposure still within 12 week window period

Discuss implications of a positive result:What a positive result would meanDiscuss the options for medical treatment and follow-upConsider the availability of family or friends who may be available to talk with if the result is positive (support systems)Does the patient have any holidays available if needed to be able to come to terms with the result Discuss contact tracing and what this meansEvaluate patient's coping skills

The main problem I see is that they are trying to take a screening test and turn it into a definitive test (well, perhaps they aren't, but that will be the result for many -- those who won't follow up any positive test).

Generally speaking, a screening test should have very high sensitivity at the expense of specificity, thus causing more false-positive results that would be "corrected" by a definitive test. False-negatives don't get followed up on, so they are what should be avoided in screening tests.

For those who might be confused -- sensitivity means the test is designed to detect "something" pretty easily -- specificity means it detects ONLY what it is supposed to detect.

While I am somewhat on the fence on the idea of home testing, I don't like this product because of the low sensitivity.

Counseling? When I was dxd, the doc said "you have AIDS, what's that mean to you?" At first I was speechless and then I mumbled something about knowing it's not a death sentence anymore. He said "OK...any questions" to which I responded "not right now." That was it!

Another doc from MD Anderson Cancer Center came in the next day and said "hey, I was treating this in NYC in the 1980's. It's not the same disease, we can reverse these numbers, you are going to be OK."

It took me two months to get into a psychiatrist and get on prozac.

In reality, a home test is probably not a bad idea, per se, in that it at least gives people another opportunity to test. Taking into consideration everything you folks have said about counseling, false negatives, false positives and so on, at least it makes it more available.

Logged

Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

The only issue that I see in this is the inaccuracy with the false negatives. (False positives are traumatic but are remedied quickly). I guess I would be 100% for the otc test if it were closer to 100% accurate. I do have issues since bare-backing is in vogue now a days. The last thing I would want would be a false neg running around unknowingly infecting dozens of people.